Tuesday, January 19, 2016

SALT LAKE CITY January 16, 2016- Epilepsy Association of Utah, Hope 4 Children with Epilepsy andUtah Kids Foundation jointly announce our opposition toHB75 Epilepsy Training in Public Schools with its current language.

While we support the effort to address the critical issue of rescue medication in Utah schools, HB75falls short in many areas. The bill does nottruly address the ignoring of the doctor-guided and federally-mandated 504 Health Care Plan, which ensures the ADA student’s right to an education in the least restrictive environment. Throughout the collaborative Individualized Education Plan (IEP) process, the 504 Health Care Plan is put in place with input from qualified school personnel, medical professionals and the student’s guardian.

HB75 would institute the Intranasal Midazolam Authorization Form. We believe this document may be considered contrary to the Federal Individuals with Disabilities Education Act (IDEA), as the Health Care Plan on record would effectively be ignored.

Only ONE rescue medication is included in HB75: Intranasal Midazolam. This medication is prescribed for about 49% of students with epilepsy, leaving the remaining 51% of the student population with seizures no recourse to receive their emergency medication.We believe this would be a discriminatory practice in that some children with epilepsy would be supplied emergency support and others would not.

We also believe this bill perpetuates the stigma that epilepsy rescue medications are unsafe, when in factcaregivers with little to no medical training routinely administer them. HB75 lowers the standard of care for students with epilepsy by neglecting the needs of the ADA student, and compromising their safety, while trivializing their right to an education.

Although HB75 DOES allow for the delegation of medication to trained personnel, which we applaud, the practical application falls short by limiting input from the parent or physician. As has been experienced with the 2006 S.B. 8 Care of Students with Diabetes in School, staffs routinely fail to implement the law, forcing students with diabetes into homeschool situations and emergency room visits.

HB75 goes against the very core of morality and common sense in servicing the student in an emergency situation.

Signed
Epilepsy Association Of Utah

Board of Directors

Hope 4 Children with Epilepsy

Co-Founders

Utah Kids Foundation

Board of Directors

######

ABOUT THE EPILEPSY ASSOCIATION OF UTAH

Founded in 1973, The Epilepsy Association of Utah is a 501(c)(3) charity dedicated to enhancing the quality of life for all individuals living with Epilepsy and seizure disorders. 1 in 26 people will develop Epilepsy at some time in their lives leading to over 100,000 people in Utah alone. Epilepsy is the 4th most common neurological disorder in the US after migraine, stroke and Alzheimer’s. The Epilepsy Association of Utah offers a public education program, statewide support groups, personal and professional advocacy, college scholarships, art exhibits, educational conferences, summer camp and more.Visit http://epilepsyut.org for additional information.

ABOUT HOPE 4 CHILDREN WITH EPILEPSY

We are parents of children with severe forms of epilepsy. Most have multiple types of seizures every day, varying in intensity and length from seconds to hours. The seizures take a toll on the children’s over-all health, ability to function, and quality of life. These children also have 10 times increased risk for sudden death. We actively advocate for the medical needs of children and adults with epilepsy. Visit http://hope4childrenwithepilepsy.com.

ABOUT UTAH KIDS FOUNDATION

Utah Kids Foundation's mission is to support all special needs families in Utah by sharing information about doctors and resources in our community, facilitate the legal exchange of spare supplies, and to provide comfort and support when our children are inpatient. Currently serving nearly 2,000 families, we are now adding advocacy and providing inclusion in community events. Visit http://utahkidsfoundation.com/ for more information.

Monday, January 11, 2016

Sharpen the scissors, get the blocks all blocked, and the edges just right; the Epilepsy Association of Utah’s 15th annual scrapbooking event is on!
Join us, once again, on February 20th, 2016 at the Viridian Center in West Jordan for 12 hours of crafting fun! You’ll be making memories while archiving them!The Association also has spaces and classes planned for quilters, jewelers and more. This year is bigger, better and more inclusive!

“Utah’s premier scrapbooking event has been offering support and awareness to the epilepsy community for 15 years. As a beloved tradition, the Crop event continues to focus on getting kids with epilepsy to summer camp and provides the opportunity to expand the crafters knowledge, skills and friendships,” says Holly Ferrin, CAO/Executive Director.

As always, all proceeds from this landmark event directly benefit pre-teens and teens attending Camp Neuro Revolution and children ages 3-12 attending the newly introduced Boot Camp. We, at the EAU, are able to provide these life-changing experiences for youth with epilepsy all because you care!

Did you join us last year? Or the year before? Or the year before that? Check the email you registered with us for a special discount!

For any additional questions or to become a vendor or sponsor, please contact the Committee Chairperson: Holly Ferrin at holly@epilepsyut.org or 801-566-5949.

######

ABOUT CROP BECAUSE YOU CARE

Since 2002, Crop Because You Care (CBYC) has been the premier scrapbook event in Utah. Raising money specifically for Camp Neuro Revolution, the event is a highly anticipated crafting extravaganza of creativity and fun! CBYC boasts 12 hours of creation, a silent auction, page competitions, well known guest speaker’s product vendors and individual classes.

Founded in 1973, The Epilepsy Association of Utah is a 501(c)(3) charity dedicated to enhancing the quality of life for all individuals living with Epilepsy and seizure disorders. 1 in 26 people will develop Epilepsy at some time in their lives leading to over 100,000 people in Utah alone. Epilepsy is the 4th most common neurological disorder in the US after migraine, stroke and Alzheimer’s. The Epilepsy Association of Utah offers a public education program, statewide support groups, personal and professional advocacy, college scholarships, art exhibits, educational conferences, summer camp and more.Visit http://tinyurl.com/EAUCBYC16for additional information.

Wednesday, November 4, 2015

In honor of Epilepsy Awareness Month, the EAU has several events and a few fabulously fun things we are inviting you to participate in! While you are raising awareness, be sure to tag us in your social media photos! We'd love to include you in our year end video.November 1st - Awareness Month Begins!November 4th - Epilepsy Awareness Day at Disneyland Expo Paradise Pier Hotel1717 Disneyland Dr Anaheim, CA 92802November 5th - Epilepsy Awareness Day at Disneyland!1313 Disneyland Dr